Day to Day

"How's Joe doing?"

I am asked this question all the time and it is such a tough question to answer, because it really changes from day to day. To those who haven't seen him lately, and happen to catch him on a bad day, it can be a bit scary. I try to reassure them that not every day is bad, but it is hard to believe unless you see it with your own eyes.

Last week wasn't one of Joe's best. He had his second infusion of Erbitux on Tuesday, and was sick ALL day Wednesday. As a result, he was a bit dehydrated and had to spend a few hours on Thursday in the infusion center getting an IV of fluids. It is really important for Joe to maintain his weight right now, and the side effects from the drugs make it nearly impossible to do so (he has lost close to 50 pounds in the last 3 months -  YIKES!).

On the flip side - over the weekend, Joe started feeling much better, was eating more and taking daily walks. We have found this awesome frozen yogurt place by our house, and have been making nightly trips there (oh the sacrifices I have to make to fatten Joe up!).

More good news....
As we have mentioned before, the fluid that builds up on Joe's stomach has been his biggest problem all along. It stretches out his muscles, makes it difficult to breath, and constantly has him feeling full so he has no appetite. Lately he averages .75 liters of fluid build up per day. When Joe had his first infusion of Folfiri+Erbitux 2 weeks ago, the doctor mentioned that we might notice some improvement in the fluid build up in 2 weeks. Well over the past weekend, Joe did notice that less fluid seemed to be building up. This morning was his paracentesis, and they only drained off only 1.1 liters (average of .25 liters/day since he was drained last Friday)!!!!

Joe relaxing to some Pearl Jam during his infusion;
He is pretty tight with the nurses now and they have started bring him their special band-aids :) 

That was huge news!!! It means that the chemo is doing SOMETHING!! The timing of this news was great too, as today was Joe's long day at the infusion center. He definitely doesn't look forward to infusion days (they are LONG BORING days), and dreads the few days following even more (when the side effects kick in), but knowing that the chemo is working makes the long days and the side effects totally worth it! Hopefully the fluid will continue to decrease and he can starting getting the paracentesis' only once a week instead of twice (and eventually maybe not at all!).

Woohoo for more good news!!!

- Jess

Thanks

Last Monday, while in the waiting room at the oncologists office, we received and email from a friend who was forwarding a message from their friend. This friend of a friend had recently completed the Relay For Life. For those not familiar with Relay For Life, it is a fundraising activity put on by the American Cancer Society where teams of people take turns walking around a track over a 24 period. During the nighttime portion of the relay, luminaries are placed around the track to light it up. The luminaries are decorated in memory/support of cancer survivors. The friend of a friend was so thoughtful and decorated a luminary in support of Joe. The email we received were pictures of this luminary.

This email couldn't have come at a more perfect time. Before each oncology appointment, I am sick with nerves. Reading the email while waiting for the doctor was a reminder of how many people are praying for Joe and really lifted my spirits.

We have been so touched by all the prayers and offers of help that we have received. We have had people bring dinners, come with Joe to his appointments, offer to watch the kids, and the best one yet was a friend offering to mow our lawn. The friend offering to mow the lawn said that he would even do it while wearing a speedo for entertainment (this would have been much more appealing to Joe if the friend were a she! - thank goodness we have a lawn service!!).

We can't say than you enough for all the prayers and support that we are getting!

The Results Are In.....

The results from Joe's CT Scan on Tuesday are in.......and they show NO new growths!! Woohoo!!!

More specifically..."no lung or liver metastasis is identified", "...gallbladder is grossly unremarkable. Spleen, adrenal glands, pancreas and the kidneys do not show any focal mass," and "bones do not show any focal metastatic lesion." Now, there wasn't necessarily much improvement, but the fact that it hasn't gotten worse is awesome.

Finally a bit of good news! Good news that we totally needed for the mental aspect of all this :)

We should note that the doctor hasn't discussed the report formally with us, but asked the nurse to share it with us, and let us know that there was no bad news.

On Tuesday when Joe had the scan, we weren't overly nervous about it because we knew that we wouldn't be getting the results right away. Today when the nurse told us she had the report and just had to get the doctor to sign off on it before she released it to us, I got totally nervous! Major 'scan' xiety!

Thanks to everybody praying and sending positive vibes Joe's way. It worked!!

Round 2

Thank you to everyone who sent us well wishes for Joe's scan yesterday. We probably wont find out the results until later this week, but when we do we will be sure to let everyone know.

We met with the oncologist on Monday and at the time Joe was feeling pretty crappy. His pain was horrible over the weekend and his stomach was so distended from the ascites. When they took his vitals his blood pressure and heart rate were through the roof.  In some ways, I think it was good that the doctor could see Joe in so much pain, as Joe has a tendency to sugar coat how he is really feeling. The original plan was to let Joe rest up for 2 or 3 weeks after the first round of chemo/radiation, but in the spirit of being as aggressive as possible they are getting him started this week. Today actually.

This next regimen will consist of Folfiri + Erbitux. The side effects are supposed to be much worse (nausea, diarrhea and stomach cramps primarily, but one of the drugs also causes a crazy acne type rash), but it is also supposed to be much more effective as well. So today we are at the infusion center and it appears that we will be here a good portion of the day. They have to run his labs first thing to ensure that nothing is out of whack, then they give him pre-meds to counter-act the nausea, finally he will get the chemo. This afternoon he will go home with his bag of chemo for the next 72 hours. He will repeat this cycle every 2 weeks for the next 6 months. This is the plan for now, but we have quickly learned that plans change.

We have come completely prepared for our long day here........2 computers, iPad, kindle, movie from RedBox. This might our only chance to watch a movie or read a book with out the interruptions of the kids fighting or the dog needing to go outside!

Scan Tomorrow

Joe is getting scanned tomorrow. This is the first scan since he has begun treatment. Please pray that nothing new shows up and that the primary tumor has shrunk!

- Jess

Round one - Done!

Joe finished up his first round of treatment on Friday!

He is officially done with radiation, and he gets a 2 week break from chemotherapy to rest up and get a bit stronger before he starts a more potent cocktail of chemo drugs.

The doctors, nurses and office staff at the radiation office were awesome, and I think Joe will actually miss them a little bit (but definitely not enough that he wants to see them again!). They have a tradition in their office that when somebody completes their final radiation treatment, all the doctors and nurses gather around and watch as the patient rings a bell. Inscribed in the bell is the message "This bell rings for all who walked this path" and at the bottom of the bell are the words "Courage - Hope - Faith - Strength - Triumph - Love."

  

Seven weeks ago, when we met with radiation oncologist for the first time, we saw another patient ring this bell. At the time,  it seemed like forever before Joe would be the one ringing the bell. Some days it does feel like forever ago that things were 'normal,' but some days it feels like these past few weeks have flown by.

Joe is anxious to start his next round of treatment. We are praying that it is an effective regimen and that the side effects are minimal.

-Jess

Paracentesis... What's all the hype about?

After a number of these swell procedures and a little online research I've come up with some conclusions - This has to be the closest thing to man-pregnancy as humanly possible, and you moms are TOUGH AS HELL!!!

Right now I'm producing a little over a half a liter of fluid per day. One liter weighs approximately 2.2 lbs, so on an average week I gain just under 9 lbs. which is basically going from inception to the third trimester in a week. Leading up to my last paracentesis, I was so uncomfortable that I slept less than ten hours and took in less than 1500 calories over a 72 hour period. It was a sucky couple of days.

The man-idural.
They clean and prep the area before inserting the catheter. At this point I know relief is just minutes away, but conversely, I also know that what they are about to do isn't very comfortable, so my heart rate still jumps.

The man-livery.
The picture above is four liters worth of cancer juice, not exactly the bundle of joy you want to hand out cigars for. Once they started the pump it took about 20 minutes to drain my abdomen. It was such a relief that I actually fell asleep after the first half liter was removed.

 
I USUALLY feel pretty good when it's all said and done, but the problem is when you rapidly gain four liters and then take it out even faster, it tends to rearrange a few things as you can see in the "before" picture above.

Check your butts people, you don't want cancer juice!